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Saturday, May 28, 2011

Missouri has really been slammed by storms—first Joplin and then my hometown, Sedalia. When the tornado sirens sounded in Sedalia and the ominous words, “Tornado on the ground!” were broadcast on the radio, my mind immediately visualized Joplin. The Joplin tornado hit Sunday and like most people, I watched the story unfold on TV. In Joplin, an F-5 tornado splintered lives and left behind a scene from a horror movie.

I knew people in Joplin through Missouri Writers Guild and Business Women of Missouri, and I worried about their safety. At the BWM Conference in late April, two of the women from Joplin told me they had seen the announcement of the presentation I was making at the June 24 Alzheimer’s Caregiver Conference in Joplin.

My friends were safe, but more than 130 people lost their lives. Among the dead were ten residents of Greenbriar nursing home. One of the dead at the nursing home, 70-year-old Richard Elmore had Alzheimer’s disease according to his stepdaughter. The Greenbriar staff was praised for moving the residents to a hallway in the few minutes warning they had.

I’ve seen nursing home staff in action during tornado warnings. One night while I was at the nursing home where Jim lived, the sirens sounded and staff in the dementia unit led people into the hallway and seated them. I pushed Jim into the hallway in his recliner. He seemed unconcerned about the chaos around him as other residents moved up and down the hall and tried to get back into their rooms. Our town had been hit hard by tornados in the 1970s and those of us who remembered those storms were a little nervous. The staff passed out ice cream and the residents settled down to enjoy their treat. The storm passed over without any damage.

Jim had never been scared of storms and had a ringside seat to the 1977 tornado that hit Sedalia. Jim worked at Memorial Park Cemetery and rather that go into the metal building, he parked his truck in the cemetery. His reasoning was that if the tornado got close, he would be safer in the open grave he had prepared for an afternoon funeral. He was too close to the tornado to see the funnel, but he could see the houses across the street exploding. “Okay,” I questioned him later, “just what did you consider bad enough to get into the grave if you didn’t do it when the tornado was just across the street from you?”

“You know, after Vietnam, I just can’t get too excited about storms,” he said. Sedalia looked like it had been bombed, but no lives were lost.

The tornado that hit Sedalia on Wednesday, May 25, destroyed 65 homes, wiped out businesses along 65 Highway, and severely businesses on the south side of town. So much debris rained down on the city and surrounding farmland that lost-and-found centers have been set up to reunite people with belongings swept up in the tornado.

My first glimpse of the damage was on my computer screen at work where I viewed a video taken from the Channel 9 helicopter. My co-workers and I tried to identify businesses and mobile home parks that were in shambles. Semis were tossed onto their sides, highline poles snapped with transformers on the ground, trees broken and flung onto cars, the school bus barn collapsed, and homes were dissected exposing furniture and insulation.

Storm stories have been shared through interviews and social media. Hundreds of photos and videos are available on Facebook and YouTube. I don’t recall ever seeing so many people I personally know on the news. Considering the path of destruction, we were fortunate—no deaths and, thankfully, only minor injuries.

This morning I thought about a Waylon Jennings/Jessi Coulter song Jim used to sing— “Storms Never Last Do They Baby?” The song is a love song about a stormy relationship compared to the storms that disrupt life. Those storms can be tornados or other severe storms, or they can be the turbulence that creates a bumpy ride along life’s journey. The truth of the song is that storms do not last. Storms swoop into our lives, and in a heartbeat, can forever change our familiar landscape. Just when we think it will bring us to our knees in defeat, a rainbow promises that life continues after the storm has passed.

Sunday, May 22, 2011

For the eleventh time, I made the trip to Washington DC to add my voice to other Alzheimer’s advocates. For the second time my granddaughter went with me.

We were at the airport Saturday morning for our 6:30 AM flight and arrived in DC mid-morning. While we waited for our room to get ready, we rode the Old Town Trolley down to the mall and toured the Museum of Natural History. Sunday, we visited the national zoo to admire the pandas, elephants, apes, and reptiles. Considering the forecast, the weather turned out to be fantastic.

Sunday evening the Summit began with the roll call of the states and a representative from each state told about their accomplishments in the past year. After the roll call, we learned a storm was coming in and the candlelight rally would be held at the hotel.

During the rally, several people spoke, but one that stood out the most for me was twenty-two-year-old Keri Roaten, caregiver for the grandmother that raised her. Just like caregivers twice her age, or even four times her age, Keri’s life has been put on hold. While each caregiver sacrifices many other events in life, it seemed particularly poignant to me that Keri missed activities that most teenagers take for granted. She missed her prom and her college dreams were put on hold. We held our candles high in remembrance and tribute for Keri’s grandmother and for loved ones living with the disease and for those whose journeys have ended.

The first time I lit a candle at the vigil, I had just placed Jim in a nursing home. I was plagued with doubts, fears, and anxiety. Five years later in 2005, I lit my candle only a few short weeks after our journey ended. This year, my heart ached and my eyes burned at the raw emotion of those were at an emotional crossroads.

Monday was a full day that began at 7 AM and ended at 10 PM. We heard Newt Gingrich, a longtime supporter, share his concern about the economic future of this country when, without effective treatment or a cure, Alzheimer’s will cost the American Government $20 trillion between now and 2050. Gingrich is optimistic that the scientific community will have a breakthrough if we invest in Alzheimer’s research. During lunch, Melody Barnes, domestic policy advisor to the President, spoke of President Obama’s serious attention to the fight against Alzheimer’s. She considers the National Alzheimer’s Project Act a step to further research and awareness.

The Summit culminates with legislative visits. We met with the health aides for our senators and our representative to discuss our legislative issues. Senator Blunt dropped by for a photo op.

This year we had a two-fold mission: the Alzheimer’s Breakthrough Act and the HOPE for Alzheimer’s Act. We used a new approach on the Alzheimer’s Breakthrough Act. Rather than asking for a dollar amount for research, we asked for research funding to be driven by what the scientific community deemed necessary to make significant progress. The HOPE for Alzheimer’s Act covers three areas: (1) Early and Accurate Diagnosis, (2) Care Planning that ensures caregivers know all available resources, and (3) Medical Record Documentation.

My granddaughter and I were tired by the time we headed to the airport for our trip home. I hope that someday we can make the trip to Washington, DC, just to sightsee. My wish is for the day Alzheimer’s is one of those diseases that people “used to have” but has been wiped from the face of the earth. Until then, I’ll pack my bags once a year to become a VOICE for those with Alzheimer’s and their caregivers.

Saturday, May 7, 2011

The black and white photo of my mom, Lula Capps, is worth a thousand words, but a million words remain unsaid. The picture doesn’t show the color of the rich auburn hair that she always called red. It doesn’t show it pulled back into the ponytail that I remember her wearing on a regular basis. You can’t see that she looked so youthful that she was often mistaken as a sister to her eight children.

The picture doesn’t show her talent as songwriter, singer, and musician. It merely hints of the intelligence of a woman who worked her way up from a sewing machine to management without a high-school diploma. She always taught us to believe in ourselves and that we could do anything we set our minds to do. She wanted her children to grow up to be independent adults with a good education and to have a better life.

She was not the typical mother of the 50s. She didn’t wear housedresses, cook and clean all day, or grow potted plants. She worked at a factory, wore blue jeans, read novels, played her guitar, and drank lots of coffee. On a Saturday night, you would usually find her at Grandma and Grandpa Whittle’s house jamming with her brothers.

The picture does not show the wonderful, complex woman that gave life to the eight Capps kids. It doesn’t show the struggles and triumphs of a lifetime. It doesn’t show the love she has given and received from her family. You see no hint of sadness for the future when she outlived every member of her birth family or the heartache of a woman who held a son in her arms only one time before he died. The picture doesn’t show her beautiful soul, only her lovely face and smile.

My mom was there for me when Jim developed dementia. She drove more than an hour each way to stay with Jim while I worked. She didn’t do this because she had to, but out of love for Jim and me.

To this day, my mom is my role model. She is full of life, healthy and active. She and my Aunt Labetta are always plotting something to add fun to their lives. They sing at nursing homes, plan vacations, and frequent jaunts to the casino.

Mom is spiritual without being overly religious. She talks about God as if she has a direct line to heaven, and won’t take a bite of her meal until she has asked a blessing.

I feel so lucky that God gave me to her and gave her to me, and I want to wish a happy Mother’s Day to the best mom in the world.

One of the most difficult decisions a family has to make is determining when it is time to place their loved one in a long-term care facility. The decision is emotionally charged and financially draining.

Our first choice is to keep our loved ones at home and, in fact, 70% of people with dementia are cared for at home. In the early stages of the disease, this is the most appropriate care. As the disease progresses, the primary caregiver must remain vigilant to changes that could make homecare unsafe.

Many times family members will ask me how I knew it was time to place Jim in long-term care. My final decision was complicated, but at crunch time, two important aspects became the deciding factors.

First, Jim only slept about four hours a night, and I was physically exhausted. During his waking hours, it became imperative to be watchful. Providing twenty-four hour a day care for an adult is different than watching over children. As Jim’s reasoning process deteriorated, each day brought new challenges as I coped with escalating situations about driving, wandering off, relentless pacing, anger issues, and depression. He became the telemarketers’ best friend as he agreed to purchases for products we didn’t need or want.

The second deciding factor involved his safety. Even though I hired caregivers, installed an alarm on the front door, and felt like I sometimes had the proverbial eyes in the back of my head, he still managed to wander off from time to time. I took him to a facility for day care only to have them call to tell me they couldn’t keep track of him. He had picked up his guitar and headed off down the road toward the highway.

Eventually, I realized that if Jim wandered off in extreme weather and I didn’t find him in time, we wouldn’t have to make a nursing home decision. I didn’t want my husband to be lost and alone without the ability to find his way to safety.

It was a heartbreaking moment when I admitted defeat. I always knew that Jim couldn’t help being the way he was, but dementia had become the victor. It was time to do what was best for both of us—his safety and my sanity.

My sons and my mother-in-law knew the time had come to find a safe environment for Jim. Other than those three, I didn’t seek or want anyone else’s input. The more people involved in the decision making process, the more complicated it becomes. Too often it is the family members who haven’t helped in the day-in-day-out caregiving that least understand why long-term care has become necessary.

My friend, Ted, kept his wife at home until the stress sent him to the hospital for open-heart surgery. The doctor told Ted to either find a home for his wife or start making his funeral arrangements. That may seem a little extreme, but often the caregiver is the one who dies and then someone else has to make the long-term care decision.

The only people who truly understand how hard it is to be a primary caregiver are those who have been one. Visiting a person with dementia for a few hours or even a few days does not create true understanding. Sometimes our love for the person with dementia throws us into denial.

A diagnosis of Alzheimer’s is hard to accept and if you haven’t seen the day-to-day changes, it is easier to believe the physician has made a mistake. One visitor told me, “I don’t think there’s anything wrong with his memory. He talked about his childhood friends and remembered every detail about Oregon.” Short-term memory goes first, and yes, at that time Jim could remember things that happened thirty years ago, but sometimes couldn’t remember our sons’ names.

The only way to know if it is time to place your loved one in long-term care is to look at the day-in-day-out situation and base the decision on what is best for the person with dementia and the primary caregiver.

Stay fully engaged with your loved one once he or she is placed in a home. Rather than second-guessing the long-term care decision, use smiles, hugs, and thoughtful gifts or treats to make your visits a joyful occasion for both of you.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

Blog Awards

Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.